beat Hodgkin's lymphoma

Here I am, at Beth’s bachelorette party. Jubilation, I tell you.

It’s been six weeks since I had my exciting ER trip and clot-busting treatments and thrilling needle-though-the-heart surgeries … and I am feeling good. Ladies and gentlemen, I am feeling “normal” and “healthy” and I couldn’t begin to describe the kind of joy I feel about having the energy to DO STUFF again. I can sleep! I’m not tired during the day! I am getting so much done! And feeling so good!

So there’s that. Bosses added the icing on the cake by telling me on Friday that they know they aren’t good at praise, but that I deserved some nonetheless and things were great at the office since I’d been back. (I sort of knew this, but it’s nice to hear.) Ypsi community band completed the summer season by performing for the UA graduation ceremony. Lots of welders and pipefitters and plumbers getting associate’s degrees, near as I could tell. During the lengthy waiting session of said graduation, I lost my med-alert charm somewhere in or near the EMU convocation center. And I found it again with a minimum of searching. And just like that, nearly everything has been going my way these days. Or maybe I just think it is, since it’s been so long since my glass was half full. Hey, either way.

Over these six weeks, I’ve graduated from shots to pills. And I’ve graduated from whole arm wraps to half arm wraps to just a sleeve and gauntlet. I bruise easily, and I’m no longer allowed a blade razor or anything other than a soft toothbrush. But these things have been true since the onset of chemo, so I don’t care. I wear this little buddy every day, usually by clipping him onto that day’s jewelry. I’ve lost 20 pounds, at least half of which was just fluid that the clot was helping me keep. I swear, five pounds of of the 20 came right off my face. And have I mentioned that I’m feeling better?

All in all, I have moments of mental celebration of my finally good health every single day. I cherish them. They’re interspersed, however, with moments of reality. I think often of dear friends I made during treatment and at support groups or cancer programs. Every time I pick up my pink-ribbon-emblazoned body wash, I remember that I bought it for Angie – when Angie was still alive. I have known some amazing heroes: Laura, Eddy, Jill, Eric, Lindsay, Ann, Nathan, Shawna, Eleanor, and Gwen. These people inspire me continually. No matter how long I have known or will know them before their lives end(ed), they are each very important to me. And although I try to put it out of my mind, I think occasionally of the plain fact that I just don’t know what my own status is on the cancer scale. I’m nowhere near “cured”, and I haven’t made it to “remission” yet. But I’ve achieved “stable”, and I’m not in treatment. My lymph nodes continue to show no progress on CT scans – that is, they’re not growing. But they’re also not shrinking. It would be possible to come up with numbers and stats and science to prove that I am almost certainly cured, and you could come up with numbers and stats and science to prove the opposite. Neither is knowable, and so my status along cancer’s sliding scale is equally unknowable. I do finally know my status on the life scale, though. I am cheerful, grateful, and joyful. I am satisfied, celebrating, and believing. And I am in many ways much more healthy than ever before.

Sure hope I didn’t leave anyone out. So the names there in the title are the teams that will be following me now, in addition to my pulmonologist, my hematology oncologist, my ophthalmologist, and my PCP.

Remember all that face, head, and neck swelling back in January? Blood clot. And all the swelling since has been that same blood clot getting larger and worse. And when my right hand swelled to the size of a boxing glove on Friday … I figured something was up. I went to the ER, where they confirmed clot with an ultrasound. I thought and then almost choked on the thought as I had it: a lot of my friends are doing this, they’re just looking at their babies on the screen, not their blood vessels. They started me right away on a Heparin drip, said I really ought have come in on Thursday, and sent me upstairs to 6B. Since IR was who I needed, and they did their best work during the week, I cooled my heels until Monday.

My surgeon’s name was Paula, and she slid a catheter up through my femoral vein (right by your hip), heading for my superior vena cava (SVC) and other veins of the head/arm/etc. But she couldn’t get there. Veins from my heart were completely occluded on both the right and the left. Paula took my port out, and then sent me back to my room for an imaging study. I was completely conscious for this entire procedure, and it was really cool. I could feel the catheter moving through my veins inside, and Paula talked to me while she was working on me. And while I loved that part of it, the rest I hated. I was so angry and upset after the surgery that I sobbed for about eight hours straight, and barked like a junkyard dog at anyone who got near me. The surgeon got a little of it. My mother did. The recovery room nurse did, and so did the nurses who received me back on 6B. They called the attending, and I gave him some of it, even though he was trying his best to calm me down. I called up my sister and gave her some of it. I finally accepted some morphine and Ativan and that turned off the waterworks. Good thing, since it was time for the imaging study.

They wanted an MRV (an MRI of the vascular system). They took me at about ten and parked me outside the room for an hour and a half. Then into the MRI. I’d never had one, and I knew they were close, but I didn’t know you were literally stuffed into the thing, like a hot dog into a bun. It was none too comfortable, especially since I had already been lying flat on my back for over ten hours (for the surgery, then the recovery, then four hours post-op to prevent femoral hemorrhage). When we had a malfunction of the IV in my right arm, they made me stay in the exact same position while we waited for the IV team. But I couldn’t do it. I called uncle and they brought down my nurse, who explained that she’d give me some pain medication if I came out in the hall – she couldn’t go into the MRI room because she’d had a facelift and had metal clips in her head. Awesome. MRV finally ended about one, and I got right to sleep.

They spent all day Tuesday figuring out what to do with me, since the MRV showed that nearly half the veins in my upper body were completely occluded by this one roaring great clot. It was nothing new, and had been going on since before this January, for sure. And this is something I don’t get. If it was there in January, why didn’t January’s CT scan (which I got to scan for blood clots) show it? Likewise February’s venogram? Sigh.

I went back to IR on Wednesday. Paula had brought in backup, her old mentor and expert-like dude. Together, they pulled some really cool stuff, and managed to get a stent into my SVC just above the heart. Paula had a catheter in through my brachiocephalic vein (left arm) with the stent on it and a loop on the end. He had a catheter with a needle and a bit of a hook on it, which he threaded through the femoral and up to my heart, then through the heart with the needle, to meet her catheter and hook it and pull the stent down into my SVC. They also cleared out as much of the clot as possible on the left, and placed two or three more stents on that side. All in all, the surgery took over six hours, but they had much success.

The difference was immediate. Within minutes, my face was less swollen, and within hours, my eyes were back to normal shape. My cheekbones and jawlines reemerged. I couldn’t believe how I looked in the mirror. Hey! My face is back! So that’s the good news.

Okay, ready? Bad news is that they couldn’t do anything on the right. Clot was too big. I had always sort of expected to hear the words, “I’m sorry, there’s nothing more we can do,” from my oncologist … but not a different doctor. So it was strange to hear it from IR. My right arm is still incredibly swollen, and they’ve wrapped it in compression wraps to be worn 24 hours daily. I’ll have therapy to massage the arm and re-wrap it, and try to work down the swelling. After 3-4 weeks in wraps, I’ll have a compression sleeve to wear on that arm. How long will that last? Well … forever.

I’ll also be on Coumadin, a blood thinner, forever. Coumadin’s a tricky little drug, with lots of interactions and lots of special considerations – like if I cut myself shaving, I might bleed for twenty minutes. For this week while my body adjusts to the Coumadin, I’m also giving myself injections of Lovenox, another blood thinner. It’s not difficult, and I don’t mind doing it – I can’t even feel it, really. Plus I get my own red biohazard sharps container.

So that’s it, folks. Lots more doctor visits and things coming up; in fact, the visiting nurse was here today to help us wrap the arm. But I’m not dead (if I even was close – not sure) and I’m basically just fine.

Still watch-and-waiting on the cancer front – next scan July 17.

I had a scan a couple of weeks ago, and a doctor’s appt after that. The scans show everything stable, and the doctor says that stable is the best possible news. He has no reason to suspect that my lymph nodes aren’t just remaining enlarged for reasons other than active cancer, and I have no reason not to trust him on that. So it’s no news, and no news is good news, especially in this case. I’ll be on 3-month checkups for a while now – next scan is in July. Still no “remission” ... but no nasty treatments, either.

My doctor decided against the January biopsy, and although I did seek a second opinion, they were also against a biopsy. I am still assigned to watch and wait until April, when I’ll have a CT to check the size of my lymph nodes. More waiting. I’d just like them to say “remission!” already.

Scans happened on Dec 1, and results arrived first thing Dec 3. Results are the same, with enlarged nodes still, and still activity on the PET scan. I’ll see the oncologist on Dec 19, and we’ll schedule a biopsy then. They’ll take out one of the nodes under my right arm and have a look under the scope. If cancer, then bone marrow transplant! More waiting now – for appointment, then for surgery, then for lab results. ARRRRRRRRRRRGH.

I didn’t really THINK I’d be all cured … but I guess I was hoping hard. I’m really quite disappointed by this news, and surprised to be so devastated.

Today was appointment day with the oncologist. And yes, I have some news – but it’s neither good nor bad and it is not what I expected.

The news is that there is now more waiting. PET and CT that I had in August are “inconclusive” and “the radiologist agrees” that they are. Chest lymph nodes shrank between May and August, but we don’t know why they were swollen in the first place, and we don’t know why they shrank and by gum, we don’t know much! Can’t do a biopsy because hey, maybe you won’t need one if we just hang on, and more because still being on even this dose of steroids means I can’t heal and aren’t you just doing a great job losing weight keep it up go team.

Sigh. I really wanted some answers. I am both angry and disappointed. Lots of both. Arrrrrrrrrrggggggggghhhhh.

Well, there’s bad news. PET and CT scans are finally done and results are in. Hodgkin’s is not completely conquered, although it did respond well to the chemo. My lymph nodes are smaller, but still enlarged, and there is metabolic activity in several areas. This means I’m headed for a biopsy, probably of a chest node. I’m set up with the oncologist for September 19th, and we’ll schedule the surgery then. If the biopsy shows viable Hodgkin’s … then it’s off to BMT-land. An autologous BMT would give me “a second and substantial shot at a cure”, according to the oncologist. Too bad the first shot was a failure.

For the first time in about nine months, I had some good news from a doctor yesterday. My lung function is back within the normal range … and the pulmonologist further said that she expects I will recover almost all of the lung function I had previous to the pneumonitis. It’s really the best possible news I could have gotten … and I’m thrilled! I’ve been smiling up a storm all day yesterday and today. The sooner we get clear of all the lung problems and I can lower the prednisone dosages, the sooner we can get after finiding out how well the chemo worked.

I did complete chemo, and it was not easy.

On the same day as the final treatment, they diagnosed me with pneumonia and prescribed antibiotics. Two weeks later, I was dramatically worse, drowning to death day by day, and nobody knew why. By now, all my various teams of doctors are pretty sure it’s bleomycin toxicity (bleo is one of my chemo drugs; bleo lung hits about 1-2% of all people who get it; YAY me) and that there’s nothing to do but steroid me to death and hope I heal. Said the oncologist: “Hodgkin’s is off the table medically. We need to heal your lungs.” That’s so hard to hear … but believe me, this lung stuff is scary enough to get my attention.

So. The focus is now on making my lungs better … so that we can then make my cancer better. Unless it’s already better. Which we won’t know until my lungs are better. Rinse. Repeat. And try not to panic.

In this first phase of my treatment, I have only two more chemo sessions to go. Just one month. Two more Saturday morning shots, two more UGLY UGLY Tuesdays, and that’s it! Then I get a full six-eight weeks off before Phase Two begins … with a bunch of scans to find out if cancer stuck around or not. I sort of think it might have … but there’s no way to know until the beginning of the second phase. I don’t care – the only thing important to me right now is making it through the end of chemo course one. I’m SO tired these days that returning to semi-normal energy levels will be something to celebrate. I mean celebrate!